Often when we grieve, we grieve a loss of some kind and in the clinical world sometimes that loss is a function, capacity or the “person” and life we knew before. Quite often the way that someone acquires dysphagia is through an abrupt medical event like a stroke, brain injury or cancer. In other cases, it can be slow and progressive like when it occurs in Parkinson’s Disease and MND and is often co-occurring with other symptoms such as difficulty walking, talking and thinking.
Regardless of the time frame or way in which it is acquired, dysphagia is a change in capacity and its effects ripple their way into one’s participation, confidence and sense of self. So much so that it often requires a process of grieving to adjust to the change and arrive at a place of resolve. Often though, rather than the change in the physicality of swallowing, it is the psychosocial impact that is grieved the most. Things like grabbing a take away coffee on your morning walk, dinner with friends, family lunch, popcorn at the movies, formal seated events can suddenly be off the table, so to speak. On top of this, the food culture that exists in society- notably here in Melbourne, means that there is a whole pocket of society and culture that is no longer accessible in the way it used to be.
So, what is disenfranchised grief? If grief is our response to loss, then disenfranchised grief is going through this response without feeling acknowledged by those close to you and/or by the wider community. It often invalidates our grief or the loss we are grieving and can lead to feelings of loneliness, confusion, anxiety and isolation. It is known to effect a person’s self esteem and leave them feeling unsupported. Having already discussed and knowing the ways that dysphagia can effect an individual and their journey, adding disenfranchised grief can have a monstrous impact to ones life, adjustment and recovery.
It should also be acknowledged that disenfranchised grief can be experienced as a partner or caregiver to someone who has lived through a major health event such as stroke, brain injury and presumably, neurodegenerative conditions like MND and Parkinson’s disease. Such events and diagnoses can often lead to secondary conditions like dysphagia among other things. Partners and caregivers are known to grieve their own role in the past, their relationship with that person and any plans they had for the future, just like the person experiencing the change in themselves.
There are ways to avoid and resolve disenfranchised grief through acceptance and support. This acknowledges and validates the loss someone is experiencing and often leads to more social interaction in the process. I think this is particularly important for people experiencing dysphagia because socialising is one of the main things that is impacted and so for their support to lead them to social occasions and interactions is a big win.
Now that covers support and validation from people close to them but what it doesn’t highlight is the lack of awareness and knowledge amongst the broader community. There is a lot of awareness around primary diseases like cancer, stroke, MND, etc., and rightfully so. However, as has already been said, sometimes it’s the secondary conditions, such as dysphagia, that have the greatest psychosocial impact on a person or their partner and caregivers. Therefore, they have to be addressed as a condition in themselves in order to create awareness and change that births inclusivity, acknowledgement and acceptance within broader society in order to address disenfranchised grief on a greater scale.
One of our missions here at The Fourth Place is to educate and raise awareness across the wider community in order to instigate the change described above and contribute to a more supportive environment for people living with and grieving their experience with dysphagia so that their adjustment and re-emergence into community can be smooth, inclusive and dignifying.
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